Life, don’t talk to me about life
It never stops does it? Expect when it does, but this isn’t about that (for once)
This post is too long for email, click through to read it all on Substack.
Quick house keeping note - if you are here for poetry or arty stuff (knitting) only, you can set up what you receive by clicking on the relevant sections only. This post will go into the ‘ME/CFS Autism’ section. Deselect that section and you won’t get these posts. Visa versa don’t want poetry, deselect that section. This link takes you through the process here.
Hello Red Cabbage Heads
How is the world with my fellow chronics? For the new people I have ME (myalgic encephalomyelitis) often know as CFS (chronic fatigue syndrome). I’ve been living with this disease for 15+ years now, possibly much, much longer.
Dear Red Cabbage Heads,
I’m back in the anger cycle again,
wrote a good post about it recently, and I know underneath that there is reason, it’s sadness but under that it’s more, and I think it is fear. I’m not sure yet but I am gradually thinking that’s what it is. I have a dr insisting on blood tests and face to face talks (though I’ve not actually managed to speak to them yet) and it’s worrying. I have had 15 years of being ignored by the system and now I have a Dr engaged (not about ME/CFS sadly) and it feels like hounding. I don’t want any thing else to be wrong, and if I do how do I get them to take the ME seriously alongside. The medical gaslighting trauma is hovering waiting to spill again. So I’m angry, I’m frustrated at being angry. And I need to connect with those deeper feelings but I daren’t.
In one way I’m scared because there might be something else fucking wrong with me, and in another I’m really angry. Angry that one anomalous blood test gets more attention on a couple of months than all my 15+ years of struggling with ME. And when I look back over the 13 years of keeping blood test results in a spreadsheet (yes I’m that organised) I realise some of what they are worried about now was also present when I was diagnosed, when I was told all my blood test results were absolutely optimal and I was in the best health I could ever be. Well that was obviously a lie.
And also there is the guilt I feel if R has to cope with yet something else wrong with me, has to deal with this crappy, shitty body more. Has to be more of a carer to me. And I’m cross and sad about that. Our life is so different to the one we imagined when young, we have hurtled into the old age part far too quickly, too early. It been a readjustment and I was just getting used to it, just starting to crept the help I needed, and then these blood tests happened.
Now I’m a bit of stickler when being told what to do, and so I have a good few notes to show the Dr. She didn’t like my blood pressure in December despite me saying it would be part of my POTS and so I’ve been taking it a few times a week (it’s actually optimal) and printed it out for her. My reasoning behind not wanting to take statins (I’ve refused them for years and this is on my notes) as they are contraindicated for those with ME/CFS1. It galls me that she is so concentrated on just one or two blood test results that she has missed the one major problem I actually have, and so I have many notes on what prescribed drugs I take, what supplements I use, what they are all for etc., what my thoughts are on various options she may suggest, have suggestions for her, etc. She may not know what has hit her.
Anyhow, I wrote this to try to sort out my feelings. I’m not sure I’ve done that adequately - but hey, it’s not frogs!
UPDATE: So I didn’t get this finished in time and now I’ve had the appointment and she admitted she didn’t know I had ME, didn’t know anything about it, didn’t know how the drugs she was suggesting (statins) worked, etc. She didn’t know a lot to be honest, but as my kids say ‘they are called GENERAL practitioners for a reason’. She did listen though, and often that’s been rare, she accepted I knew what I was talking about, and accepted my reasoning completely. It was good not to be gaslit and not having to argue.
So basically, I am now adding a couple of other supplements2 to my already extensive regime. I’ll add it below in footnotes in case anyone is interested.
So that’s all for now, I’m not dying any more than I already was, though the stress has not been helpful.
Ta-ra Tx
☕️ buy me a virtual coffee here ☕️
If you have enjoyed my ramblings I’d love for you to click the ❤️. It pleases the social algorithm, lets others know there’s something interesting here, as well as letting me know you liked it and giving me a little virtual hug. Without virtual hugs I have been know to get sad 😜. Shares are good too and a comment buoys me up even more 😁 A comment of what you liked, what you didn’t etc would be most gratefully appreciated.
Disclaimer: this is my understanding and I am not a medical Dr, most of my information has been gained via Dr Myhill’s book Sustainable Medicine.
a) One of the ways statins work by going into your mitochondria and stopping the production of CoQ10. My mitochondria are already fucked I don’t need anything else going on inside there that might interfere with what little energy it does manage to produce.
b) I already supplement with CoQ10 why would I want my natural production stopped?
c) the brain runs on cholesterol I don’t want to risk dementia by lowering my cholesterol. I have a theory that dementia seems to be on the rise because we have demonised fat, tried to eliminate it from our diet and replaced it with sugar instead. I actually believe sugar has a lot to answer for and fat isn’t the demon it is made out to be.
d) CoQ10 is a powerful antioxidant that stops cholesterol turning ‘bad’ which is when it does damage, why would you want to restrict it?
e) the liver produces extra cholesterol when it senses inflammation in the system. Cholesterol reduces inflammation. My arthritis has been playing up and so I have more inflammation. I would rather address the inflammation than the substance that is trying to help that inflammation.
Supplements I take daily.
Multivitamin B12 D3 + K2 Vit C Glutathione complex - mitochondrial support CoQ10 - mitochondrial support Milk thistle - liver support Lions Mane - brain fog Turmeric - inflammatory pain Magnesium complex - for sleep Ashwagandha - for sleep Niacin B3 - help with cholesterol High dose Omega 3 - help with cholesterol
The last two are the ones I’m adding in. It costs me a fortune every month, but hey ho.
This was helpful. I have M.E. too x
Really tough. I've given up on GP for M.E. (I had a very good physio person who helped me accept that perhaps the way I deal with it is by living at extremes which seems to work ok - until it doesn't) . Glad they listened though. That's something at least xx